Category: Research

Complain about NIH's Claims on CBT and GET

Medline Plus, NIH’s web site for patients, just published an article from health news distributor Healthday, based on the recent, discredited U.K. PACE study. The new article states that “cognitive behavioral therapy and graded exercise therapy are among the best available treatments for extended relief” of ME/CFS. Fortunately, if you want to file a complaint about this article, it’s super easy.

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James Coyne declares “moral equivalent of war” on PACE

James Coyne gives a public talk on PACE Trial In a public talk in Edinburgh on Monday, psychologist Professor James Coyne declared the “moral equivalent of war” on the practices and assumptions that, he said, have allowed the “bad science” of the PACE trial to go unchallenged by scientists and the media. The authors of

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Call for HHS to Investigate PACE

Call for HHS to Investigate PACE Recently, journalist David Tuller, DrPH, published an investigative report outlining serious concerns with the conduct, analyses, and results of U.K.’s £5 million PACE trial for chronic fatigue syndrome. PACE investigated the efficacy of cognitive behavioral therapy (CBT) and graded exercise therapy (GET) Since then, other researchers and journalists have

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Scientists demand independent analysis of PACE trial

Virology Blog today published an open letter from six leading scientists calling on The Lancet to seek an independent re-analysis of data from the controversial PACE trial. The Lancet published the first PACE trial paper in 2011, which examined psychological and exercise therapies aimed at getting chronic fatigue syndrome patients more active and was based

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Take this preliminary survey on treatment benefits and harms

I have been looking at this tantalizing survey by the Autism Research Institute for a few years now. It aggregates 27,000 parents’ reports on the effects of pharmaceutical and alternative interventions on autistic children. It’s not a clinical trial or a substitute for doctors’ advice. It uses subjective, self-reported measures (which we all know are problematic). It’s

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Government orders release of PACE trial data

The Information Commissioner’s Office (ICO) has ordered Queen Mary University of London to release anonymized PACE trial data to an unnamed complainant. Queen Mary has 28 days to appeal the decision. The report outlines the scope of the data requested, Queen Mary’s arguments for refusing to release the data and the Commissioner’s justification for siding with the patient requesting the

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Prof. Jonathan Edwards: PACE trial is "valueless"

OPINION PACE is valueless for one reason: the combination of lack of blinding of treatments and choice of subjective primary endpoint. Neither of these alone need be a fatal design flaw but the combination is. The only possible mitigation of this flaw would be if: 1. There were no acceptable alternatives to a subjective primary

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NIH announces new clinical study and move to NINDS

Editor’s note – this is an emerging news story. Edits will continue to be made to this page as we receive more details. The National Institutes of Health (NIH) announced today that it will undertake a new clinical study and “reinvigorate” the long-standing trans-NIH working group to further ME/CFS research, an effort to be led by the

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Misleading PACE claims should be retracted

Given the weak and flawed methodologies of the PACE trial, which claims that CBT and GET led to the recovery of ME/CFS patients, we, the undersigned patients, doctors, scientists, parents, children, family, friends, caretakers and #MEAllies: – call upon The Lancet to retract the claim made in its February 2011 editorial [1] that 30% of

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